posted
tick battler and catgirl - thank you. Deep down I DO know that this is not me but the bugs.
Lymetoo - I understand. Your comment said that both SCD and GAPS allow too many carbs. I was just pointing out that many people do SCD or GAPS in a low carb version. Actually, with less carbs than BED allows for example.
Posts: 165 | From TN | Registered: Jul 2011
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2roads
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Good luck 2doggies, let us know how it goes.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Catgirl
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posted
quote:Originally posted by anuta: ...Few days after starting MMS ALL other herbs, homeopathics and supplements that I was taking before stopped testing. And I mean ALL- killers, hormonal support, Core, methylation support and even detox. The only thing I'm testing positive its binders(Chlorella, DE and charcoal).
Fascinating Anuta! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Not sure if anybody is still reading this thread, but I need opinions. I mentioned above the medication mix up in January. Well, I am still on 37.5 mg a day of hydrocortisone and that is barely enough. At least i think it is. Sometimes it's hard to figure out if I am on too much or too little. Sunday and yesterday I took Biltricide (1,200 mg three times a day) and by Sunday night I had so much anxiety I skipped the MMS yesterday. Had worked up to two drops. The anxiety is better today, but I am still not even close to where I was in January before the medication mix up.
Back then, on 22.5 mg of HC, I had energy, did light exercise, felt positive, joyful, and hopeful. Now, on 37.5 mg I feel numb, blah, and have anxiety. Today I went back on MMS and decided to do 1.5 drops for today. I started around 9:30 AM and now, two hours later, I have a headache and backache. This could be die off or low cortisol. I have no idea.
So my question...should I stop the MMS and any antimicrobials really until I find a baseline with the hydrocortisone? This is my third or fourth time giving oral MMS a try and each time something happens. I hate to postpone again, but I also have no idea what is going on right now and how my adrenals are handling all of this. I hate feeling this low/negative and the anxiety that comes with it.
posted
I dont know the reason for your use of cortisone so you can decide, but much inflammation is caused by pathogens of one sort or another. MMS will get to the cause.
If you have something like addisons disease or something similar attempt to get your dosage right first.
You must expect a herx from MMS. This will certainly happen for most folks, either from the lyme itself or other pathogens you have or other detox of metals etc.
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Catgirl
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Have you energetically tested combining both the MMS and bilt (taking them the same day)? Maybe together they are doing it to you (it might just be too much). You could also try dropping the oral MMS while on bilt, and just do the enemas if you're going to stay on parasite meds.
My gut says your adrenals come first, so I would probably try lowering or eliminating either the CD or parasite meds (but you could still try CD enemas if you stop it orally).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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tick battler
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If you had anxiety from the biltricide, it is clearly killing parasites. I think you started too high with the MMS. Did you research the baby bottle method? I would start with 1 drop mixed in 8 or even 16 oz of water and take an ounce of that no more than every hour during the day. That is the best way to avoid a herx from the MMS.
We have found that we tolerate the parasite meds much easier if we are on MMS at the same time. It seems to help clear things out. But first we go up gradually on the MMS before we add in the parasite meds (vermox is the only one we use as part of Kerri's protocol). But it is fine to use others too. They are systemic though, and normally cause more herxing then the vermox, which stays mostly in the gut.
If you are starting MMS and starting biltricide at the same time, IMO, that is too much. I would ramp up VERY slowly on the MMS and then once you get to at least 8 or 10 drops/day, try adding in the biltricide. The adult goal dose is 24 drops/day but it may take months to get to that level so as to avoid serious herxing.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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nefferdun
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posted
They claim raw camel's milk is curing kids of Autism too. Supposedly kids that have never spoken, begin to speak overnight.
Yasko was making a fortune selling supplements for methyl cycle mutations. Supposedly she was healing autistic children too. After blindly following the protocol for a year, one day I decided to put on two pairs of reading glasses to see the tiny little print of ingredients in the Neurological Health Formula.
Imagine my shock when I read it had folic acid, the very thing kids with MRHFR can't utilize, cyanocobalamin (the cheep B12 with cyanide) and magnesium oxide (nothing more than a stool softener).
Everyone is promoting cures. Everyone is out to make money off of people desperate for a miracle. The fact that the man who "invented" the MMS cure calls himself a "Bishop" and also sells pastor titles, is a big red flag to me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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2roads
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It is a joke Neff, and I wish this topic would cease.
My family and I have been a victim of a very dangerous protocol already, and I for one, am ready for this one to end.
Hope you find your answers 2doggies, and that they don't include this.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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tick battler
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nefferdun - I am curious, do you have an autistic child? What is your great expertise with this protocol? Please share. Just because some protocols don't fully heal, doesn't mean another one can't.
Have you tried camel's milk? It does cause herxing in many. We have tried camel's milk and it helped a tiny bit but did not heal my children. There is nothing that has CURED autism and PANDAS and ADHD like Kerri's MMS procotol. I, unlike you, can speak from experience in this area. Believe what you want but why diss something when you know NOTHING about it?
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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2roads
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I am curious tick battler, were your kids "autistic" when you saw Dr. J? I mean, were they really suffering cognitively?
I didn't get the impression when we spoke back in 2011, that they were like this. I mean, they actually sounded like they weren't herxing, and that they were really not too far from getting there. You wanted a herx reaction so you moved on.
Now, FOUR years later, you are talking ADHD, autism, and a slew of other issues.
We were much better before we tried some of the unconventional methods you suggested. I mean the NP you use said no one treated with the GSE she used, and I later realised why......of course the dose you told me was not what she used either, turns out.
I'm sure my son has residual issues from TBI's, but nothing like the ramifications of that therapy.
I think you should contemplate that perhaps your cures (although meant well) are causing 70% of your children's issues. I have tried to tell you that in the past. I am the only one on this board who may be best to speak for that, as I have walked down some of your paths.
My intention for saying so is to help your children.
It's a tough pill to swallow, but sometimes we need to cut our losses, think back, and perhaps not move forward.
Sorry for diverting this thread 2doggies-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Catgirl
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Neff and 2roads, have you read Kerri's book yet? It's really good!
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tick battler
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I am done posting on this thread and I do not communicate any longer with 2roads since she started disparaging me but for the record to clarify the untruths said about my children above by 2roads I will say this:
Since Kerri's CD protocol, all 3 of my children are excelling in all subjects in school, playing competitive sports, taking piano lessons, having playdates and enjoying life. We still have some herxing and rough days as we continue to heal and expel worms but my children have NEVER been better. We will most likely terminate my son's IEP by the end of the year because he no longer needs it.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Catgirl
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quote:Originally posted by tick battler: ... Since Kerri's CD protocol, all 3 of my children are excelling in all subjects in school, playing competitive sports, taking piano lessons, having playdates and enjoying life.
tickbattler
Sorry folks, but this speaks volumes.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Having a grandchild with Lyme/autism who just got potty trained at 12 years old and knowing his Mom was bit by a tick in her teens which was called ringworm and seems no one knew any better at that time -- I understand comments berating how you are looking after your kids are completely hurtful and out of line.
I'm sure you have done the very best for your kids and I applaud you. It is a long hard road and if you have found something helpful, I am happy for you. Families dealing with lyme/autism need all the support they can get. It can be very overwhelming and depressing at times. I have the greatest respect for you.
Lots of love to you and your family!
Posts: 590 | From Canada | Registered: Oct 2007
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surprise
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(copied from Looking)
' Families dealing with lyme/autism need all the support they can get. It can be very overwhelming and depressing at times. I have the greatest respect for you.'
THANK YOU. I have a middle child and we've been through autism, Lyme, and PANDAS.
People have NO idea what this really is like, unless they are living with it, OR,
they put their head in the sand (our set of grandparents here choose to deal with it this way),
or are ignorant. What scares me half to death are the younger parents I see every day at the elementary schools
who think their ADD spectrum kid is normal. The scary part? It IS the new normal.
Anyway, I may not choose MMS, and I am sorry if I have ever been too opinionated about it.
I've shared before, we have done a gamut of treatments for recovery with my daughter, some I am sure others would harshly judge.
God bless.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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My grandson has had many treatments and teaching methods recommended over the years. The ABA method (and this is only one part of it) where they sit them at the table and repeat over and over "what does the dog say?" (or any other animal) actually gave him PTSD.
If you say anything like that to him now, he starts screaming and crying and hitting at you saying "NO dog says!" "No dog says!" and it takes him forever to calm down.
Some parents have had success with it, but even the doctor agreed this method was harmful to him.
I still would not berate a parent for using it -- it may work for their child. I would only tell them kindly to watch for signs it's not a good fit.
Same with the MMS -- if you choose to use it proceed cautiously and watch carefully how your child reacts. I'm sure the parents are doing this anyway.
With Lyme and Autism, there are no one size fits all and nobody has all the answers or we would all be better. And unfortunately treatments are costly and usually time consuming, no matter what you choose -- even trying to keep your child on organic food!
You are so right that our choices are sometimes judged harshly but I think most of us know how to disagree without making anyone feel personally attacked, I hope. And yes all of us choose the wrong words from time to time.
And I hope your child finds the best treatments for her.
Posts: 590 | From Canada | Registered: Oct 2007
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Marnie
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I have an autistic child (Asperger's) who also has seizures, ADHD and learning disabilities. He does NOT have lyme - his problems/symptoms are due to genetics.
He also has a lot of anxiety and depression.
He looks to thrive on glutamate and adrenaline (= epinephrine), but too much isn't healthy.
In a jam, glutamate is used as a brain fuel...Google it if you don't believe me.
PLP (active form of B6), 50mg BID completely stops his glutamate triggered seizures. Glutamate -> GABA needs an enzyme called GAD which is PLP(B6) dependent. PLP comes in sublingual forms too.
NORMALLY we store about 20 days worth of B6 in our liver...it is that important - MANY functions.
LOW dose DMAE taken in the morning is incredible. He is much less anxious and less depressed. He just started taking it a few days ago and the change was immediate and very apparent.
He also takes 1 lecithin capsule BID.
And I make him ***eggs over easy*** to preserve the incredible nutrients in the yolk (must cook the white otherwise biotin levels plummet).
His CT scan of his abdomen = "moderate hepatic steatosis" = "fatty liver" (non alcoholic).
His brain CT scan indicated "possible intracranial hypertension". One cause of that maybe excess homocysteine thanks to Depakote! (which according to a gov. website depletes B6 and raises homocysteine). Obviously he is off Depakote and we are using nutrient supplements and healthy foods (eggs, etc.) instead.
Deficiencies that can cause a fatty liver are: methionine, choline, serine, and/or biotin. Those are ones I've found so far and ones we are addressing.
A fatty liver = metabolic syndrome = diabetes eventually. It is called NFLD = non alcoholic fatty liver disease. It is a serious problem for many Americans.
MANY *drugs* raise blood glucose levels...you would be surprised. Not a good thing.
Our brains need an amazing amount of glucose ongoing. At NIGHT, when we are sleeping, a liver process called gluconeogenesis kicks in to provide that glucose...provided the liver is functioning properly and is healthy.
L-serine converts to D-serine in the brain via an enzyme called racemase. That enzyme needs PLP (B6).
D-serine is used to treat schizophrenia.
Research the impact of D-serine on glutamate gated NMDA receptors...we RECENTLY found out is a powerful agonist (helper).
For KIDS...Omegabrite (kids doses) may *help*. So may a supplement called "Attentive Child" by Source Naturals. Look closely at what is in it.
BTW...DMAE:
***It is the active component of Centrophenoxine, or Lucidril, a pharmaceutical designed for cognitive health in the elderly.***
DMAE is in a lot of skin formulas to rid skin brown spots that happen as we age (usually combined with Alpha lipoic acid and vitamin C). It is considered an "anti-oxidant".
Do NOT take low dose DMAE if on acetylcholinesterase inhibitors...too much acetylcholine isn't good...need some, the right amount...not too little, not too much.
I personally know a longstanding lyme patient who told me she has NO REM sleep (was tested in a sleep lab).
Do you know the REM-acetylcholine connections?
Ongoing inflammation is bad. It is vital to reduce the inflammation AND hit the pathogen.
Google: inflammation blood brain barrier.
It should come as no surprise that candida is in the temporal lobes in AD and the amyloid beta proteins are NOW considered a *protective mechanism*. Vitamin C impacts amyloid beta...good thing or bad? Combine C with VCO (natural anti-bacterial, anti-viral, anti-fungal)as a doctor is doing to SLOWLY cure her husband's AD.
Maybe more at play though...APOE4 persons are at increased risk for AD due to DDT-> DDE exposure and that pesticide is still in our environment! APOE4/4 persons have less eNOS = endothelial nitric oxide synthase. (One of MANY features of Berberine is that it upregulates eNOS.)
Our "detox" organs and the vessels that deliver nutrients to them need help...esp. the liver and kidneys, IMO.
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